Adult Congenital Heart Disease – PediaCast 307
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Show Notes
DESCRIPTION
Dr Curt Daniels joins Dr Mike in the PediaCast Studio for a discussion on Adult Congenital Heart Disease. As surgical and medical outcomes improve for children born with congenital heart defects, more and more of these patients survive into adulthood. We cover the unique problems of these patients, the importance of long-term follow-up, medical and surgical management, and the latest research topics. Be sure to join us!
TOPIC
Adult Congenital Heart Disease
GUEST
Dr Curt Daniels
Adult Congenital Heart Disease Specialist
Nationwide Children’s Hospital
LINKS
Adult Congenital Heart Disease Program at Nationwide Children’s
6 Myths About Adult Congenital Heart Disease (web booklet)
Adult Congenital Heart Disease Fellowship Training Program
Adult Congenital Heart Association
American Heart Association
Congenital Defects in Children and Adults (American Heart Association)
Contact Dr Mike – Show Questions, Comments, Topic Ideas
Nationwide Children’s – Request an Appointment or Referral
Nationwide Children’s – Non-Urgent Medical Questions
Transcription
Announcer 1: This is PediaCast.
[Music]
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello, everyone, and welcome once again to PediaCast. It's a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio. It is February 4th, 2015, Episode Number 307. We're calling this one "Adult Congenital Heart Disease". I want to welcome everyone to the program.
So we're going to veer off the pediatric path a little bit today and talk about a condition in adults, but it's a condition that starts at birth, persists through childhood, and arrives at adulthood with the unique set of problems. It's a topic that many of you out there… You may have a child at home who has congenital heart disease, and you'll be interested to know what's on the horizon, what will your kids up be against during the adult years. So that's coming your way.
First, though, I do want to remind you about our hospital blog, 700 Children's. You can find it at 700Childrens.org. Unlike many healthcare blogs, we don't rely on one or two writers. We call upon the collective expertise of our entire institution, so you get articles written by the experts themselves, which means they're full of great information, from a source you can trust.
Some recent topics, kidney stones in kids — they're not common, but they're not unheard of either — debunking diabetes myths, the benefits of reading to your child, encouraging youth engagement with their community.
And then, I love this one, the benefits of fluoride in drinking water. So it's another of those topics, yeah, kind of like vaccines, which lends itself to fear mongering and there's a lot of agenda-driven folks out there using fear rather than evidence to promote their position. So if you want an evidence-based assessment of fluoride in drinking water without the scare tactics, just the what's the truth, be sure to check out our hospital blog at 700Childrens.org.
0:02:21
All right, so what are we talking about today on this particular program? After all, that's why you stopped by. Well, as the title suggests, we're covering adults with congenital heart disease. Now, you've heard of some of these conditions. Things like single ventricle hypoplastic left heart, transposition of the great vessels, tetralogy of Fallot, ventricular septal defects, coarctation of the aorta, plus there are many more. These are all heart defects that are present at birth, and as medical technology advances and surgical and medical outcomes improve, we're seeing more and more of these patients graduating into adulthood.
OK, so you say transfer their care from a pediatric cardiologist to an adult cardiologist, right? Well, not so fast. Adult cardiologist typically deal with a different set of problems once acquired in adulthood. But adults who bring problems with them from childhood into adulthood, they have a different set of needs, different risks, different follow-up requirements, different procedures and treatments.
And so, you really want a specialist who takes care of adults with congenital heart disease. We have one such specialist in the studio with us today, Dr. Curt Daniels, with
Nationwide Children's Hospital and the Ohio State University Wexner Medical Center. We'll get him settled into the studio in just a few minutes.
Before we do, I want to remind you, PediaCast is your show. So, if there's a topic you want me to talk about, you have a question for me, or you want to point me in the direction of a news article or a journal article, it's easy to get in touch. Just head over to PediaCast.org, and click on the Contact link. I do read each and every one of those that come through, and we'll try to get your comments or your questions on the show.
0:04:02
Also, I want to remind you, the information presented in PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So if you have a concern about your child's health, make sure you call your doctor and arrange a face-to-face interview and hands-on physical examination.
Also, your use of this audio program is subject to the PediaCast Terms of Use Agreement, which you can find at PediaCast.org.
All right, let's take a quick break. We'll get Dr. Daniels settled in to the studio and be back to talk about adult congenital heart disease right after this.
[Music]
Dr. Mike Patrick: All right, we are back. Dr. Curt Daniels is Director of the Adolescent and Adult Congenital Heart Disease Program at Nationwide Children's Hospital and a professor of Clinical Cardiology at the Ohio State University College of Medicine. A Buckeye through and through, Dr. Daniels attended medical school at Ohio State, completed a combined pediatric and internal medicine residency at Nationwide Children's and the Ohio State University Wexner Medical Center, and his fellowship training was done at the same institutions.
As both a pediatric and adult cardiologist, Dr. Daniels is uniquely qualified to diagnose, treat, and provide long-term care for the growing number of adolescents and adults with congenital heart disease.
So that's our topic today. It's with a warm welcome that we say hello to Dr. Curt Daniels. Thanks for joining me in the studio.
Dr. Curt Daniels: It's a pleasure to be here.
Dr. Mike Patrick: I really appreciate it. It's kind of déjà vu here a little bit. So, I have to start with an apology. We actually did this interview a few months back. We've done over 300 episodes of this program, and for some crazy reason, we had an audio hum that I just couldn't get rid of, and so we had to ask you back. So we really appreciate you putting up with us.
Dr. Curt Daniels: Sure. Sure. No, it's a pleasure to be here.
0:06:13
Dr. Mike Patrick: So, let's start out just with a sort of definition. What is, and I kind of alluded to it in the introduction, but what is meant by the term adult congenital heart disease?
Dr. Curt Daniels: It truly is specialty today. It's a specialty because of what you mentioned a little bit in the introduction, because of the successes in the pediatric world, in the children's hospital, pediatric cardiology, ICU, cardiothoracic surgeons, congenital surgeons. The success of that has created this population, and therefore created this new specialty called adult congenital heart disease.
And it really is centered in providing care for those patients that fall somewhat in a gap between the traditional specialties of pediatric cardiology, which is well-equipped to take care of congenital heart problems in the pediatric world, and adult cardiologist who really are trained in acquired heart disease, developing disease as an adult. This population falls between those, and so this specialty of adult congenital heart disease today truly is filling that gap, and it's really made up of specialists, of cardiologists today, and nurses and whole team of people.
Dr. Mike Patrick: Let's kind of go back to the very beginning when congenital heart defects occur? Who is affected by these disorders?
Dr. Curt Daniels: It's the most common birth defect, congenital heart disease. It's about 1 in every 100 births today, seen in every country, every socio-economic class. For the most part, there really isn't a cause or etiology. There are some genetic abnormalities, things that could be pass down, but in general, most forms of congenital heart disease are really still today unknown.
It's a wide variety of diseases that affect almost every part of the heart from the walls in the heart which can have holes to how valves developed, how chambers developed. So it's a wide spectrum of disease, congenital heart defects. Today, we have tremendous ways to evaluate and treat those types of defects.
0:08:12
Dr. Mike Patrick: As we're seeing surgical correction and really improved medical and surgical procedures for these, we're really seeing more of an adult population with congenital heart disease compared to years back.
Dr. Curt Daniels: Sure, it is a population shift, and that is because of what we mentioned earlier, the successes. Twenty, 30 years ago, the majority of the population was children with congenital heart disease, and because of these outstanding therapies provided today, for the most part, about 85 to 90% of kids born with congenital heart disease are expected to survive to adulthood.
And so, if you look at the epidemiology today, the data sets that we have, the research, not only from the US but from other countries, it's a population shift. So now, about two-thirds of the congenital heart disease population lives in the adult world greater than 18 years of age. The population has shifted from the pediatrics to those adults, to the adult world, to the adult medicine world. This definitely changes, how our approach should be because there are adult issues that are different than pediatric issues, and therefore, again, we have to direct our care towards that, our focus towards that.
Dr. Mike Patrick: Now, when we talk about surgical corrections of congenital heart disease, I mean, just sort of simplified, I think a lot of parents out there may be thinking, this is a plumbing issue and you're going to do something surgical to fix the plumbing issue. So, then, why is long-term follow up even needed?
Dr. Curt Daniels: We say today that congenital heart defects that go to the operating room are corrected, but probably not cured for the most part. Anytime that the surgeon goes in to the heart, they have to get into the heart in a certain way, and that creates incisions, scar tissue, patches, valves that may even be repaired, holes that may have been closed. So those areas of the heart have somewhat been invaded, and because of that, there are residual problems related to this.
0:10:06
So since now we have enough adults to look at the issues, we certainly find that there are problems with the adults that maybe weren't expected and now we're seeing, and we're getting a grasp of that, of how to handle that. But most forms of congenital heart disease today that undergo surgery are not a complete cure, but they can certainly correct the problem effectively so that children can have a fairly normal childhood in some circumstances. Again, after decades of that form of heart disease, we see that potentially wear on the heart in certain ways.
Dr. Mike Patrick: And as the heart is growing, there's a shift and change in mechanics, and even valves that are put in don't necessarily last forever.
Dr. Curt Daniels: Absolutely, so the valves, that's a great point. Valves that have surgery to correct them in childhood, certainly that repair, most of the time doesn't last a lifetime. As you say, they outgrow that valve disease, or a leaking valve can become much more significant as it might wear on the heart over time. Again, first five, six, ten years, maybe 15 years. Again, at 20 years or 30 years, that effect on the heart could be quite different.
Dr. Mike Patrick: I suspect there's probably a lot of folks out there with congenital heart disease who kind of look at it like, "My problem was fixed. I feel great now. I might go see a new doctor and tell him, hey, I had this problem way back when." But they don't really realize that this is something that still should be followed.
Dr. Curt Daniels: And that's one of the most important message, I think, today — is that young adults and emerging adults out there with congenital heart disease need to be evaluated, need to be evaluated by someone who at least understands that form of heart disease. It's complex, these forms of heart disease. Again, these are things that many physicians in their training just do not see enough of to feel comfortable with.
So, I sort of say, if you have a scar in your chest or had the scar placed in your chest in the front to side around the back, and you had congenital heart disease surgery, you need to be evaluated, because there are silent issues that may not come to play for decades later that need to be found and addressed.
0:12:06
Dr. Mike Patrick: One of the barriers, patient education. Just that the patients need to know, "Hey I need a follow-up." Another barrier, really primary care doctors knowing that yeah, this is something… Even though everything looks okay, their blood pressures OK, there's no symptoms, still there should be follow up. But I guess, another barrier really is just that there are a large number of adult congenital heart disease programs out there. Speak to that a little bit.
Dr. Curt Daniels: They are emerging. There are a number of programs, but certainly not enough programs to handle the volume of patients. We estimate in the United States, there's about 1.5 million adults with congenital heart disease, and those are pretty good numbers. They're pretty good estimates of what we believe we have currently in the United States. There certainly aren't enough specialists trained to take care of that large population.
Today, it's still a collaborative between the primary care physicians, the specialists, cardiovascular medicine physicians, whether they be pediatric cardiologist, or internal medicine adult cardiologist working with congenital specialists. But in most major cities, there's about a hundred programs around the country that are listed on a website. The Adult Congenital Heart Association website, ACHA, they have a website that has the programs listed around the country. About a 110 now were listed, and that's a place to start at least.
Not only checking with your physician and they can do some homework for you, but that's a way you can get on the website, look in the directory, find some names of specialists that you could start with.
Dr. Mike Patrick: Yeah, that sounds great. Now, what are some typical symptoms that can show up during the adult years that could be sort of a warning sign that something's going on. So we've talked about even if you don't have any symptoms, really, you should be followed. But what are some things you definitely — we're going to say you definitely need to be seen anyway — but just the warning signs to let people know this is becoming an issue?
Dr. Curt Daniels: The two biggest areas that we see problems with the group of adults with congenital heart disease are exercise intolerance. We may call it shortness of breaths, so unable to exercise as well. And again, this is a tricky symptom because many people say, "Well, I know, I'm in my 30s," or, "I'm getting a little older, and maybe I'm not in shape I used to be back in high school, and so I can't do the same things."
0:14:12
But being short of breath, not doing as well as you expect, that's certainly a sign, a concerning sign, and we see that with valve disease. We see it with heart functioning abnormalities, so that's an important sign and symptom. Chest pains, certainly anytime you have discomfort in your chest should be evaluated because it could be a significant heart problem.
Then, a third one I would say is palpitations, meaning you feel something skipping in your chest, your heartbeat feels abnormal to you. Heart rhythm problems make up about 25% of the abnormalities we see in adults with congenital heart disease. Many times, these are benign, but also sometimes, they could be significant and serious. The surgeon again is going into the heart and then create a scar tissue as part of your repair. And those areas of scar tissue can be areas of electrical activity inside your heart that could be significant. So any funny heartbeats, any palpitations, any time you feel your heart beating abnormally absolutely should be checked out.
Dr. Mike Patrick: But as we're saying, really, anyone who's had their chest opened and have had corrective surgery, or any other congenital surgery that maybe didn't require surgery, still needs long-term follow up.
Dr. Curt Daniels: Absolutely, because as an example, there are forms of congenital heart disease we are now learning more of in the last, again, maybe decade. We've learned quite a bit about it, is aortic enlargements or aneurisms. And so there's several forms of congenital heart disease that lead to aortic enlargement, and you really do not feel that aortic enlargement until something potentially would happen, which might be catastrophic. And so many forms of congenital heart disease can have these abnormalities of the aorta, of the arterial system.
So again, if you have congenital heart disease, had surgery or being followed, make sure that somebody these forms of congenital heart disease, with the complications are relayed to them.
Then the proper evaluation, there are certain ways in which we evaluate the heart as adults that we maybe didn't do as children — different ways to look at the heart that's different in our population and in the children, teenagers, and even in those who have acquired heart disease. Different ways we evaluate the heart, we're looking at connections. We're looking at how the surgeries have performed. We know the complications we expect from that childhood surgery, so that evaluation is very important.
0:16:20
Dr. Mike Patrick: Absolutely. You talked a little bit about the website where folks can find an adult congenital heart disease specialists. We'll put links to that in the Show Notes for this episode, PediaCast 307, over at PediaCast.org, so people can find that easily.
What goes into making an adult congenital heart disease specialist? What kind of background and training do they have that differentiates them from an adult cardiologist or pediatric cardiologists?
Dr. Curt Daniels: Many of the adult congenital heart disease specialists today in the United States probably learned by experience. They had taken care of adult congenital heart disease patients, either through pediatric cardiology or some training of their own. Again, just taking care of patients, learning about the patients and their disease processes.
But for about the last, again, decade or so, couple of decades, there's been training programs now in adult congenital heart disease, so cardiologist can specialize and spend extra time in training either one year or two years. Now, everything's moved to two years of additional cardiology training in the field of adult congenital heart disease. This is really what's emerging, and what we'll see now for the future, is that anybody who trains in this field will undergo two years of additional training after regular cardiology to be an adult congenital specialist.
We have to build the field and so, it's going to take a number of cardiologists that are experienced in adult congenital heart disease. They have been doing it as part of their practice — we need them — but then this new crop of cardiologists coming along, they are now training. We have a training program and trained about 10 adult congenital cardiologists over the last ten years or so. They've gone out, and now, they are program directors in other cities and taking care of patients.
0:18:00
We'll continue to do that. Other places around the country are training as well in this two-year fellowship program.
Dr. Mike Patrick: I would imagine if a particular person out there finds himself living in a place that doesn't have an adult congenital heart disease specialist nearby — right now as we're filling in the gaps until this field really comes to completion — folks who or maybe an adult cardiologist or a pediatric cardiologist taking care of these folks, if there were questions, you guys are always happy to consult and talk to other providers, am I right?
Dr. Curt Daniels: Absolutely. That's a common part of our practice is to receive information from outside, from places that again the cardiologists are taking part of their patients. They recognize that this is something out of the realm of what maybe they're used to taking care of and they want an expert opinion. And so, it's very common for us and other programs to receive information about a patient, to review that information. We can get a lot from just reviewing records, looking at images, and then form a decision just base upon that. Eventually, we do need to see patients. We do need to talk to them, examine them, but from afar, you can gather a tremendous amount of information to help out a local cardiologist, "This is the type of testing I suggest that you do. This is what you should be looking for."
So even if you are in a more remote area that doesn't have one of these programs or specialists nearby, your doctor, your cardiologist can certainly contact specialists to see how you're doing, to provide the proper test. Then eventually, if you do need to have an expert evaluation, potentially travel to a place.
Dr. Mike Patrick: Absolutely. I mean, it's not always, it's not best case scenario not to see the patients, but then again, without having any expert influence at all, that's not a good situation either.
Dr. Curt Daniels: Absolutely.
Dr. Mike Patrick: So when is the best time then to transition from a pediatric cardiologist to an adult congenital heart disease specialist?
Dr. Mike Patrick: That will be different from city to city and from program to program. If they have an adult congenital heart disease program, we believe it's best that adult congenital program is integrated with that pediatric cardiology program. They have a part and a presence and they're known, together, the transition should be smooth. It shouldn't be an abrupt process. It should be smooth and there should be cooperation between the pediatric providers and the adult congenital heart disease providers. So there is a smooth transition that the parents, the patient, know this is coming up.
0:20:25
It's one of the things we really stress today, is that early on in the process, early in the teenage years — you could pick 12 or 13 years of age if you like — you should start to be discussing about what's going to happen when I become or when my child becomes an adult? What is the process in plan here at this institution, at this city where we're at today?
Again, in city to city, it might be slightly different. In some cities, the adult congenital program is part of the pediatric cardiology program. They live there, they have a program there, and that's part of how we do things here in Columbus. We bridged two between two programs, but we have offices and we have clinics in the pediatric cardiology heart center. Some places live on the adult side, and they will come over to the children's facility to see patients.
So every place is different. The point is, I think for parents and for patients in those teenage years — and again, I would stress that probably around 12 or 13 — a conversation should be had about what's going to happen when we become an adult. What is the plan? And that should not be a shock to the system, "When you become 18 or 21, I'm going to send you to this provider. You've heard of this person, these people."
Again, your pediatric cardiologist has provided tremendous care for up to two decades by that time, and we don't want it to be a shock. And then, we know there's tremendous trust with that pediatric cardiologist. So should be smooth. It's going to be different from city to city sometimes. We want an integration between the two programs. But certainly, as patients and family members, parents, you should be an advocate and discuss this with your pediatric cardiologist about a transition plan.
Dr. Mike Patrick: I can see that being pretty stressful for families. I mean, here's this doctor that you've trusted for so long. Then, again, I can see what you're saying. You don't necessarily just want to boot all of a sudden one day. You do want to think about it ahead of time.
0:22:08
Dr. Curt Daniels: Yeah, and we really do want that to be a smooth process. I mean, I can't emphasize that more. There's research into this where, again, patients and families have had a chance to give the response about that processing clearly. The best way to do this is through a smooth process where everybody's involved that's cooperative. It's been discussed on appointment after appointment leading into that time. So everybody knows exactly what's going to happen.
Dr. Mike Patrick: I can see that as a source where some folks may fall out of the system to some degree because then if you go to an adult cardiologist who may not have experienced dealing with these patients, and they say, "Oh, everything looks great," that could be a place where you sort of fall through the cracks.
Dr. Curt Daniels: You've hit again a very important point that the term we use "loss to care". The parents are very responsible. They bring their children to their pediatric cardiology appointments on time, and yearly. Then, when folks become young adult and they become more independent, will they come to their appointments on their own? Do they show up? They did hear the transition process? Did it occur, "I am an adult now. Who shall I really be seeing? Do I still need to see a pediatric provider, an adult provider?"
So there's a lot of confusion around that 18 to 21, 22, 23 age group. The data also shows that, that patients in general will see their pediatric cardiologist annually, but once they've become an adult, that moves out about every five years, if not longer. And then, the data would tell us that patients, come back in the care when they're sick, when there's a problem with their heart.
We certainly don't want that to happen, so regardless of the system, it's very important you stay in care. Almost always, almost for all patients, about once a year, do that transition process. So again, patients and parents need to be advocates in this process.
Dr. Mike Patrick: We talked a little bit about the symptoms that are sort of warning signs that something is going on. What are the underlying conditions that create those symptoms? So what are the problems that adults with congenital heart disease who were fine for a period of years, what are some of the problems that they can get into?
0:24:07
Dr. Curt Daniels: The number one and number two happen to be ventricular dysfunction. That just means that the heart chamber that pumps out to the body, to the lungs, becomes weak, becomes dilated, doesn't work properly. That's about 25% of problems that we might see,
The second one is arrhythmias, and those could be arrhythmias as stated. It could be more benign, more of a bothersome type of arrhythmia that certainly makes you feel uncomfortable, maybe isn't so serious. But then, we also see a much higher than expected number of more serious arrhythmia problems. That's again, probably our two biggest categories is the ventricular dysfunction problem, the heart muscle function, and then arrhythmias.
Beyond that, we see valve disease. Certainly the valves had been touched upon in many forms of congenital heart disease as children, and they require replacements, sometimes repair. Some of these are just being watched really closely. We see aneurisms of the aorta which against is a difficult process, because we got to follow that aorta, we got to follow the size of it. Again, certain forms of congenital heart disease may lead to that. It can be concerning.
The other organs of the body also sometimes can be affected because there are certain conditions with congenital heart disease, just because of having surgery early and having maybe more than one surgery. They can affect other organs, the kidneys and the liver, that are also parts that we watch as well. So we really think, it does affect, it can affect multiple parts of the body. Again, knowing what to look for certainly can ease a lot of the concerns that patients have, and parents have by being preventive. Finding the right tests to do and looking for the right things can certainly ease a lot of the concerns.
Dr. Mike Patrick: So what is in your toolbox in terms of the tests and procedures that you do use to kind of follow these things along and try to identify a problem early, hopefully even before they're symptoms? What kind of tools do you use?
Dr. Curt Daniels: Certainly, I would always start with something you mentioned earlier too, which hit a chord to me, is actually talking to a patient. The history of our patients is unique. Every patient with congenital heart disease probably has their own somewhat unique story – their timing of their surgery, what type of surgery, so us knowing all of that is really important to what we decide to do.
0:26:17
Patients really also, again, need to take some ownership and parents of every aspect of their child or their congenital heart disease. What age did you have surgery? Where did you have it? What type of surgery? Try to get those records that helps us when we see patients to go through all that information. So getting history and finding about that.
When we get to the testing, we typically would do electrocardiogram and EKG, very simple tests. It can tell us about the heart rhythm, tells us a little bit about how the heart chambers are doing.
A little bit more advanced imaging would be something like an echocardiogram, an ultrasound of the heart, a very benign, again, procedure in terms of causing a discomfort. We can see then the heart, how the heart's functioning, the valves, how the heart looks, again, gives us tremendous amount of information. It's a good screening test.
A lot of times, our adult patients — because that imaging may not be adequate — move on to what we call more advanced imaging, and that could be a cardiac MRI where we actually can see the heart and sort of turn it on the computer and twist it and look at it at different ways, and get great information about the heart — the connections that were made with some of the surgeries, how the valves look, how the vessels, much more detailed information.
0But that's some of the early type of tests will do and depending on again, it really depends on the diagnosis. For instance, you mentioned some of the diagnosis earlier. If you have something like tetralogy of Fallot, we know what we're looking for, and some of the test we'll do are directed towards what we're looking for. If you have coarctation of the aorta , completely different diagnosis again. Our tests are directed towards that.
So us knowing the diagnosis and the surgery and how that surgery was performed, there's four five different ways to correct coarctation of the aorta . Each one may have a little bit different in terms of what the complications might be down the road. So again, all those tools are really important for us to make a great assessment.
0:28:00
Dr. Mike Patrick: And maybe some surgical procedures that aren't even performed anymore because of the high complication rate that had been seen in later years.
Dr. Curt Daniels: Absolutely. That's one of the really great things about the congenital heart disease community, is that we, from what we're seeing in the adults, has helped out now in the pediatric world maybe how to tweak some of those surgeries. Again, just like you say, some surgeries that, we're seeing today in our adult patients that were done as children, they're not doing any longer. So there's been some changes made because of that.
Dr. Mike Patrick: What types of surgical treatments then may become necessary, that weren't… so, you know, they had their fix and then they have a period of years where they were doing great, really didn't need anything. Are there instances then when do you need a sort of medicine, or you do need to have another surgical procedure?
Dr. Curt Daniels: There are. I would say again, in the majority of the patients, it's following them, doing imaging. Sometimes, medication, sometimes, again, adults who have adult issues, and so, we see high-blood pressure in adults. We see adult-related issues, but specifically for congenital heart disease, the most common things that patients may need to undergo are the valve replacement.
Again, in tetralogy of Fallot that diagnosis, it's very common for a patient to need a pulmonary valve replacement because that valve had surgery very early in life, doesn't tend to be normal throughout childhood and young adulthood, and eventually needs to be replaced. That's a common a procedure that we see in our patients.
There are sometimes, in our patients, it's just medicines like you mentioned. Maybe medicines to help control blood pressure or fluid arrhythmias, sometimes medications for that. So again, these types of procedures we do commonly, in the adult cardiology world, but now, we're fine-tuning them for the adult congenital population.
Dr. Mike Patrick: Now, our program here is in cooperation with Nationwide Children's Hospital and the Ohio State University Wexner Medical Center. So some people out there may be thinking, and particularly if you are one of those who had been "loss to follow up", and you're not seeing anyone for your congenital heart disease, maybe wondering, "How do I get connected with that?" Like, "Do I go to Children's? Do I go to Ohio State?" In your both locations, how do you figure out where to go?
0:30:08
Dr. Curt Daniels: In our particular programs, we see patients of both locations. We felt it's important to have the expertise of both hospitals, both institutions. They both bring different levels, different types of expertise. So we span across both hospital systems.
We believe in, again, most programs that have an adult congenital program do the same. They work in both the children's capacity and in an adult hospital capacity because of need in both. If our adult congenital patients, even with complex disease, need that certain procedures done in adult hospital, we can be there. We can help out, we can help guide. We have certain specialists at Children's Hospital. They're very in tuned with congenital heart disease and the cardiac cauterization labs, and the electrical labs, and the surgical suites that again are used to these forms of congenital heart disease. So we need the specialists on both sides.
Some of our patients prefer being in the adult environment, and they prefer being at Ohio State and seeing patients at that location, and some prefer to stay at Children's. We see, in our institutions, adults at Children's Hospital at any age. We don't have an age limit at Children's Hospital for congenital heart disease, and so we see 40- and 50-year-olds and 60-year-olds still at Children's because they want to be there. They prefer to be there. They grew up there. They feel comfortable there, and we're certainly fine seeing them at either location. We're trying to make it easy for the patients.
Dr. Mike Patrick: Before we close out, we'll let folks know how to get connected to the program, because even though you're in two locations, it's one door and then they can get connected with the program and figure out where they're going to go.
One group of patients that we haven't talked about, pregnancy. So a lot of young women may feel really healthy, "This is a problem I had years ago. I've not had any issues with it," but pregnancy can put quite a stress on a heart that's had congenital problems.
Dr. Curt Daniels: Absolutely. As we talk about this population reaching adulthood — so I guess I'll say record numbers, we have more adults today with congenital heart disease than ever — obviously, approximately half of that population are female. Many women want to have a family and want to have children, and there's questions about can they have children with their form of heart disease. What's the rate of transmission of their congenital heart disease to their children? What's the chance of that happening? How is the heart evaluated? How do we follow their heart?
0:32:22
So these are all really important questions. First and foremost, any women who's considering pregnancy should have a proper evaluation by a specialists who understands their form of heart disease. We don't throw heart disease in one big bucket. It's not black and white. It's all shades of gray in terms of risk, and so some women with congenital heart disease have virtually no apparent risk, and some have significant risk. So it's important to go through a pre-pregnancy evaluation and decide where you fall on that scale in terms of risk.
Then, during pregnancy, followed properly by those again who understand your heart disease — "What should we be looking for during pregnancy?" Followed by specialists in the OB specialty. So high-risk obstetricians many time, anesthesia doctors who also are in tuned with this form of heart disease.
Many places, including ours, around the country have now developed specialized clinics and programs for pregnancy. And so we follow many women right now who are pregnant with heart disease within our program. We meet and discuss each patient who's pregnant, formulate a pregnancy plan, a delivery plan. What type of monitoring should we do with the heart? How should the delivery be performed? What's the anesthesia we're going to use? Then, how do we follow that patient afterward?
So it's a whole world of sort of specialized care for that pregnant woman. But number one is to make sure you have a pre-pregnancy evaluation, because there are certain things you might want to do prior to pregnancy that we wouldn't want you to do during pregnancy — certain types of testing, certain types of evaluation. Again, it depends on the type of heart disease.
Dr. Mike Patrick: This really kind of shows you how this program is multi-disciplinary. It's not just the adult congenital heart disease specialist, but you do have OB-GYN, cardio thoracic surgeons that may get involved, cardiac rehab, nutrition, social work.
Dr. Curt Daniels: Absolutely, we rely on many specialists and pull them in to our worlds in terms of taking care of adults with congenital heart disease. You're exactly right. In one of our clinics, we call Single Ventricle Fontan Clinic, we have psychologists that come to clinic with us and see every patient, social workers, dietitian, and exercise physiologist. Then they see us as the cardiologist. They have four or five visits with specialists just in that one clinic, and we see those patients about once a year in the specialized clinic.
0:34:37
Also, as you mentioned, the specialists in cardiothoracic surgery, electrical, electrophysiology, those that take care of rhythm problems in the cauterization labs, in the imaging labs. Nurses, very important, obviously, we have specialized nurses and adult congenital heart disease that again understand the congenital heart disease, but also understand adult medicine. So it is an entire team and a programmatic approach.
Dr. Mike Patrick: Again, over at the Show Notes, PediaCast episode number 307 at PediaCast.org, we'll have links so folks can get connected with your program pretty easily.
What are some of the hot topics in adult congenital heart disease research right now?
Dr. Curt Daniels: There are number of areas that we're now trying to address, and some of them are related to how to minimize some of the procedures we need to do. So for some of our patients, they may have had three or four surgeries by the time they become an adult. To go and do another open-heart surgical procedure, obviously carries additional risk. Each time you go in, we know that it can potentially carry more risk.
So finding new less invasive ways to approach some forms of heart disease is really important. And so, there are technology today leading to transcath that are valve replacement. So replacing heart valves in the catheter lab without open-heart surgery. Patients have this procedure done, go home the next day. We've performed hundreds of these procedures now in our patients, adults with congenital heart disease.
0:36:02
Going after arrhythmia problems, trying to get a better handle on how we should approach rhythm problems, being more pro-active. So instead of waiting for patients to have significant and serious rhythm problems, can we detect this earlier? We can go after this rhythm problems early in the electrical labs, doing things, procedures called ablations when they're necessary to remove these arrhythmias before they become a problem.
And then, really trying to address on a research standpoint, multi-center research. So we need to have multiple centers collaborating with patient care to find out why some of these things are happening.
If our own institution, we follow about 3,500 patients or so, that's good information, but if you take each and individual diagnosis, it becomes less and less. But if we collaborate with 12, 15, 17 centers around the country, we can capture great information about why these things are happening, and that can lead to new therapies.
Dr. Mike Patrick: Yeah, great. We really appreciate you stopping by and talking about adult congenital heart disease with us and appreciate you coming back to do it again despite our technical problem the first time.
Dr. Curt Daniels: Thank you.
Dr. Mike Patrick: We have lots of links for you over at PediaCast.org. Again, you just want to look for the Show Notes for this episode, 307, at PediaCast.org. We have a link to the Adult Congenital Heart Disease Program at Nationwide Children's. That's the way to get connected with the program, but we also have resources, brochures, videos, also a Web booklet called "Six Myths About Congenital Heart Disease". So if you like to know more about that, definitely check that out.
We also have a link to the Adult Congenital Heart Disease Fellowship Training Program. So if you are in college and you're pre-med, or you're in medical school or you're a resident or you're a cardiologist, and you want to know more about our Adult Congenital Heart Disease Fellowship Training Program, we have a link for you there.
Also, the Adult Congenital Heart Association, they have lots of great education and support on their website and that's where you can find an adult congenital heart disease specialist located in your area of the country.
0:38:00
Then, of course, the American Heart Association just has tons of educational and support materials. They have a whole section of their website that deals with congenital defects in children and adults. They have subsections on just learning about congenital heart defects, the impact of congenital heart defects, understanding your risks of congenital heart defects, symptoms and diagnosis, care and treatment, tools and resources. They have a whole support network that they're involved with, and they have Web booklets as well.
So be sure to check out all the resources available at the American Heart Association, and again, I'll put links for that in the Show Notes over at PediaCast.org as well.
Then, finally, a really important link is just it says Connect Now With An Adult Congenital Heart Disease Specialist, and this takes you to our Welcome Center. You fill out a form that has your desired route of being contacted by the hospital. You can put in your phone number or your email address, however you want us to get back in touch with you, just to make it easy as possible to get connected with the program. So you'll find all of those links over at PediaCast.org. again, the Show Notes for Episode 307.
All right, once again, thanks to Dr. Curt Daniels. We're going to take a quick break and I will be back to wrap up the show right after this.
[Music]
Dr. Mike Patrick: All right, we are back with just enough time to say thank you to each and every one of you. Just really thanks for taking time out of your day to make PediaCast a part of it. If you know anyone with adult congenital heart disease or you know any families with kids who have congenital heart disease, make sure you let them know about this particular episode of the program. May not pertain to you and your family but certainly would pertain to them, so make sure you kind of spread the word about this one on your social media channels — so Facebook and Twitter, Google Plus, Pinterest, all those areas.
Thanks to Dr. Curt Daniels, adult congenital heart disease specialist from Nationwide Children's Hospital and the Ohio State University Wexner Medical Center.
0:40:24
That does wrap our time together today. PediaCast is a production of Nationwide Children's Hospital. Don't forget PediaCast and our single-topic short format program, PediaBytes, that's B-Y-T-E-S, are both available on iHeartRadio Talk which you'll find on the Web at iHeart.com and the iHeart radio app for mobile devices.
Our show archive, which includes over 300 programs, as well as our Show Notes, transcripts, terms of use, and our contact page are all available at the landing site, which is PediaCast.org.
We're also on iTunes, under the Kids and Family Section of their podcast directory. You'll find PediaCast on Stitcher, TuneIn, Downcast, iCatcher, Pod Bay and most other podcasting apps for iPhone and Android.
We're also on Facebook, Twitter, Google+, and Pinterest. Of course, we really appreciate you connecting with us there, and again sharing, retweeting, re-pinning our posts so you can tell your online audience about our little show.
We also appreciate you talking us up with your family friends, neighbors and co-workers, anyone with kids or anyone who takes care of children. As always, be sure to tell your child's doctor about the program. Posters are available under the Resources tab at PediaCast.org.
Until next time , this is Dr. Mike, saying stay safe, stay healthy and stay involved with your kids. So long, everybody.
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Announcer 2: This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.
As an adult CHD survivor with two children with CHDs, and an author who writes about living with heart defects/disease and transition care, I find this article is so necessary. Thank you for this post.